In October 2017 a patient focus group was held at the National Renal Complement Therapeutics Centre in Newcastle. aHUS patient representatives from across all of the UK were present to discuss their ideas for generating a National Service for aHUS with patients at its core. To help facilitate discussion staff from the NRCTC, members of the rare disease group and Sandra Currie from Kidney Research UK were present.

The key wishes from the patient group were:

1. Patient information- One of our key remits is to provide high quality advice to patients and clinicians about C3G and aHUS. We have developed a website (www.atypicalhus.co.uk) providing both lay and professional advice

2. Publicising recent research – an NRCTC Newsletter is now produced on a quarterly basis highlighting recent research, changes to the aHUS service, and a questions to the expert feature. This is available on line (www.atypicalhus.co.uk), by e-mail or by post to all patients, family, friends and clinicians.

3. Regional patient roadshows. It was suggested that aHUS staff and RDG members could hold patient information meetings around the UK. The first NRCTC regional roadshow was held on the 10th March in Durham with patients attending from the North East and Yorkshire. The next planned event will be in Liverpool.

4. Patient handheld record – To ensure equality of access, in addition to our digital platforms, we are creating a written version of our aHUS and C3G patient information. This will be included in our aHUS Patient Handheld Record which will be sent to all our patients on initial diagnosis. In addition to providing information this will act as record of important blood monitoring tests and contact information.